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The Voice from Washington
Heat Up Your Summer: Become a PD Advocate!
By Monica Billger
Grassroots advocacy can accomplish many things for a cause. It can change public opinion, increase funding for research and garner other resources to support an issue, policy or community. As the leading voice for patient advocacy in Washington, DC, the Parkinson’s Action Network (PAN) has established a strong national advocacy program for the Parkinson’s community. While PAN provides the leadership, the success of this program depends ultimately upon success at the grassroots level — community by community and individual by individual.
The primary responsibility of a local PD advocate is to educate elected officials and community leaders about Parkinson’s and the issues that affect people who live with the disease. What people often do not realize until they try it is that the process can be “two-way”: the act of advocacy can give patients, families and loved ones a sense of empowerment and a connection to a larger community.
There are many ways to get involved. From meeting with your representatives, to writing articles for the local paper, to creating an awareness event, you too can be on the front lines of educating your community about this disease.
Reaching out to your member of Congress
Personal visits are a great way to educate public officials about Parkinson’s disease. This summer, members will be in their home districts during the week of July 4 and throughout the month of August. To identify your members of Congress and find their contact information, visit PAN’s website at www.parkinsonsaction.org and click on “Contact Congress.”
In the beginning, you may ask yourself, “Why would my representative want to meet with me?” The compelling answer is because you are a constituent and an expert on an important issue: living with Parkinson’s disease. When you call or email an office, mention that you live in the member’s district/state and that you are aware the member will be working in the district during the summer. Through PAN’s website, you can email your member directly. You can also find helpful hints about what to include in a letter.
Whether you meet with, speak to or write your member of Congress, PAN recommends following some key discussion points. First, be sure to explain what Parkinson’s is and how you are connected to the disease (for example, as a patient, family member or friend of a person with Parkinson’s). Second, share your personal story; there is nothing more compelling than telling your legislator how Parkinson’s affects your life.
Then there is the matter of the issues you need to discuss. PAN’s website can keep you informed of PD-related topics facing Congress. Here you will find up-to-date information on legislative issues and background materials that can be downloaded and printed for you to take to your representative.
Attend a town hall meeting
Town hall meetings are venues where the senator or representative holds a public gathering with a question and answer period. To find out if your representative has any town hall meetings scheduled, check his or her website or the events section of your local newspaper. To make your presence known, ask a PD-related question at the meeting and leave your contact information for follow-up.
Extend an invite to a support group
Another way to make personal contact with your Congressional representative is by inviting him or her to your local support group meeting. This is an ideal way for them to get to know the PD community and learn more about the disease while directly seeing how Parkinson’s affects a person’s daily life. The experience will make it more likely that they will get involved with PD issues.
Write it down!
Local media outlets often run personal-interest articles and letters to the editor, providing advocates with a wonderful opportunity to educate the greater community about Parkinson’s disease. The power of your story helps put Parkinson’s front and center with a large audience. Focus on your personal experiences, and keep your story under 300 words (most papers will not print anything longer).
A great way to spread the word is to arrange an appearance before a community group — places like veterans’ centers, senior citizen communities and Kiwanis clubs. Visit your local Chamber of Commerce to find a list of the organizations in your community, and use the contact information to get in touch with a group leader or member. See if you can get yourself invited to make a presentation.
Events to raise awareness
Many Parkinson’s advocates have raised awareness by organizing a walk or run, sports tournament, luncheon and many other activities. Contact PDF or PAN for information about starting your own awareness event!
Monica Billger is the Director of Outreach at PAN. Founded in 1991 and based in Washington, DC, PAN is the unified advocacy voice of the Parkinson’s community. For more information, visit the PAN website at www.parkinsonsaction.org or call (800) 850-4726.